Saturday, February 28, 2015
We have Luke's genetic test results. We recently met with the folks at the MIND Institute to interpret those results. Turns out, Luke is one in a billion. He has not one but TWO rare genetic disorders. So rare, in fact, that neither one of them turns up on one of the "connect with other rare disease parents" websites.
We're calling it Lukey Syndrome, since there's no syndrome name for this combination. The first variant causes developmental delay with little to no progress throughout childhood. This comes as a bit of a blow, since Luke has actually been a little more interactive since we've gotten his seizures under control.
The second variant gives us insight into what form of epilepsy Luke has. That's still a hard word to type. Longtime readers may remember me having a hard time with the autism label about a year ago. This is similar. For some reason, seeing "seizure disorder" under his list of diagnoses doesn't bother me, but the full on epilepsy label is a little harder to take. This type of epilepsy is often associated with developmental delays, as well, so poor Luke really didn't stand a chance.
There's something very sobering about having someone tell you it's not going to get better, there's nothing we can do, you can come back in a year if you want to.
I've been spending a lot of time researching online, and the line between "seeking information" and "obsessing" is starting to blur.
The largest study I've found of Luke's primary condition had a whopping 23 participants. I think the reality is that due to modern technology, we're just starting to accurately diagnose different conditions. 100 years ago, Luke would have been labelled "feeble minded" and that would have been the end of it. Even now, if parents are unwilling or unable to push through the decidedly user unfriendly medical system all the way to the end, kids get a more generalized diagnosis. For instance, Luke qualifies for an autism diagnosis. "Autism" covers a broad spectrum of issues, and has no single known cause. I'm inclined to think now that Luke is NOT autistic, because we know what his condition is, but Luke displays many autistic behaviors.
Really, what difference does it make? People are going to see him in his wheelchair and ask, "What's wrong with him?" Should I have the big, "He has a rare disease" talk with them, or would it be simpler to just say, "He's autistic," and move on? Does that do a disservice to other people with autism diagnoses?
Sometimes answers just bring more questions.
We are still waiting on an appointment with Luke's impossible to get in to see pediatric neurologist to get the results of his muscle biopsy, MRI, and spinal tap (you know, from October and December, sigh). But I'm not expecting any earth shattering news from those, now that we have the genetic test results. Either one of Luke's variants could have caused his delays, quirks, and seizures. Both together just means it's beyond unlikely that his development will improve.
This is it. We have the diagnosis we've been chasing for the last 20 months, and it doesn't really help.
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Friday, February 27, 2015
Unlike last week and the week before, this was a productive week! We finished week 21, which has been taking us forever, and zoomed through almost all of week 22!
We started this project a couple weeks ago, but just finished it this week. You know how that goes, right? Paint something, set it aside to finish "later," only later keeps getting pushed back?
Well, I'm glad we finished this project! Medieval knight shields, to go with our studies of castle times!
I got the pre-cut boards from Etsy, and we used silver acrylic paint on them.
After a couple coats of paint (we went through most of the tube for just 2 shields), we applied cool vinyl stickers to them. Jack is using a craft stick to rub the sticker down before peeling off the covering.
I'm thinking of hot gluing a hangar on the back so the boys can put them up on their wall.
This one is Eli's. I think they turned out nice, but if I had it to do over again, I would have used spray paint instead, in the hopes of not having the streaky look of the brushed paint.
Miss Hannah lost her 3rd tooth! Jack lost one recently, too. He handed it to me, and I put it in the drawer of my bedside table. One of my teens watched and said, "You're such a mom." I'm not sure if that was supposed to be an insult or what.
These were Katie's creations from a previous art class, that I missed getting a picture of earlier.
We've finished up anatomy and moved on to astronomy. Eli did a great job assembling and painting this model solar system.
This week, the upstairs vacuum got a haircut. Gross, right? Looks like a small, furry animal died on the table.
This was one of those ideas that was better in my head than in reality. (I seem to have a lot of those, honestly.) A few weeks ago, Zach took the boys to the park to play disc golf. They had a blast, so I thought I'd get them some frisbees. I found these blank ones and thought how cool it would be for them to draw their own designs on them with Sharpies. They weren't as into it as I hoped they would be. Jack's is around here somewhere. It's red with a skull on it. Maybe I'll have Hannah and Katie color a couple over the weekend.
This week's episode in our Home Art Studio DVD was Monet Bridges.
The boys used 3 different techniques to paint the wavy water, the squooshy trees, and the bridge. This one actually made me want to get out the acrylic paints and try my hand at it. I did just pick up some little canvas boards...
We started learning Chinese history this week, and we used Draw and Write Through History to do a guided drawing of the Great Wall of China. Eli's drawing was going well, but when I asked him to use colored pencils to finish it, it didn't turn out the way he wanted it to, so he asked me not to show the completed picture.
We're also working on a terra cotta warriors art project I hope to be able to share with you next week.
Brianna came home from school one day and asked me to root around in the sewing room for some mask embellishments. These are the masks she came up with for her assignment.
Linking up with Home to 4 Kiddos and:
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It wasn't easy, there aren't nearly as many more natural options, and often you have to really go out of your way to find them. Which is why I was so excited about reviewing the Manuka Oil and Manuka Honey Shampoo & Conditioner from Koru Naturals. They contain no sulfates or parabens.
With the word "honey" in the title, I expected the shampoo and conditioner to have more of a honey or vanilla-like fragrance to them. I was pleasantly surprised to discover they have a peppy, fresh mint scent that helps wake me up in the morning. I've been using them both for about 6 weeks now, and I'm pleased with how soft and manageable my hair is.
This picture was taken after washing and conditioning with the Manuka Oil and Manuka Honey products, then leaving my hair in a braid for 24 hours.
You can purchase the shampoo and conditioner as a pair for $14.95. They are also available individually.
We also received Pure Emu Oil from Koru Naturals. Now, honestly, when I heard we were getting Emu Oil, I thought it must be an acronym for a blend. You know, E-something, M-something, U-something oils. Or maybe an oil derived from feather shafts or something. I didn't realize until after I'd been using it and decided to research it, that I was rubbing refined bird fat on my legs.
Really. It turns out that emu oil (unlike baby oil) really is what it sounds like. It's a by product of the emu meat industry. Which is bigger in Australia than it is here, of course. If you can get past the squeamishness, it's a rather nice oil, actually.
Emu oil can be used in many ways, but I like it best as a body oil after shaving my legs. It's a little lotion-y, absorbs well, and doesn't leave a greasy residue like my previous body oil did. I smooth it on my legs after my shower, and rub the extra on my elbows. You know how when you're not getting enough water, your elbows get dry? This helps with that.
Emu oil can also be used as a hair moisturizer. I've been using argan oil in my hair for over a year now, and the emu oil gives similar results.
The 2 ounce bottle we received sells for $9.95. It's available in 4 ounce and 8 ounce sizes, as well.
You can connect with Koru Naturals on Facebook or Pinterest. Be sure to check out all their great products on their website.
In addition to the shampoo & conditioner and emu oil we received, other members of the Schoolhouse Review Crew reviewed Koru Naturals' Pure and Simple New Zealand Lanolin Creme, the Pure Lanolin Lip Balms, or the Koolpurrie Restoring Balm. You can read their reviews by clicking the box below:
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I was recently stuck at the DMV for 3 hours. Fortunately, I had a good book with me! Terri Blackstock's new Twisted Innocence kept me company during the long wait.
This was part love story, part suspense, with a good helping of redemption, as well. Holly's made some bad choices, and it's caused her to doubt her instincts. But she believes Creed when he says he was set up, and bad guys are out to get him. Holly's family takes longer to believe that somebody who would kidnap a woman and her baby can be the good guy in the equation.
If you're looking for action packed, how's a shooting, a poisoning, and a couple of bombs? This story kept me on the edge of my seat, waiting to see what would happen next.
This is a book 3, but it stands alone well. I didn't feel lost coming into it without reading the first two. If you read on a Kindle, you might want to wait until April when the The Moonlighters Collection will be released. This contains all three books in the series for one low price.
In Terri Blackstock’s third and final book in her Moonlighters series, Twisted Innocence, readers are in for a story of suspense and redemption. Dangers old and new threaten Holly and her baby, and lives are demanded as sacrifices for love. Through a complex web of mistakes and regret, redemption is the one hope Holly has left to hold on to.
Celebrate the series' final release by entering Terri's Nook giveaway!
One grand prize winner will receive:
- A Nook GlowLight
- The entire Moonlighters series
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Thursday, February 26, 2015
Recently, my friend Robin asked if I'd be interested in reviewing something from her Mary & Martha site. I had no idea what Mary & Martha was, so I went to check it out.
Oooh, pretty! There were all sorts of neat housewares, jewelry, stationary and gifts.
They even have a line of coffee. You can read more about the company, and about Robin here.
Robin sent us two of these darling backpacks! They sell for $17, which I feel is a very fair price for the size and the nice, sturdy construction.
Katie loves her new backpack, and the detachable kangaroo has quickly become a favorite.
You can connect with Robin via Facebook, Twitter, Pinterest, or Instagram. Now, for the giveaway! Enter below to win $25 in quality merchandise from Mary & Martha!
a Rafflecopter giveaway
Thanks for entering, and good luck!
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